This Positive Life: In the Midwestern U.S., Forming a New Life
August 14, 2012
What's your relationship been like with doctors? You sound like a very empowered client of health care. You know a lot about what's going on with your own body. So what has been your relationship with health care?
Well, I've been really fortunate. I've had some really great doctors. But I also was one of those kinds of people that, early on in the disease, I read everything I could find: every publication I could find, anything I could find on the Internet. I watched the news every night to see if there was a story related to HIV.
I educated myself -- and, like many of us, sometimes knew things before our doctors did. Because they were so busy taking care of their clients, they oftentimes didn't have the time to do the research to stay completely on top of the new happenings that were going on. But I've had some really good doctors and I've been real fortunate.
Luckily, I have had health insurance. I got my first health insurance on my own, prior to my diagnosis. Once they found out that I had HIV, they knew they couldn't just eliminate me from the policy. But I would get a letter in the mail, and the letter would say, "Unfortunately, we're having to raise the premium on this policy for everybody." But then they would say, "But if you don't have any preexisting conditions, we have another policy that you might want to switch to." So then, everybody that was on my policy who didn't need it would switch. And then it would make all of us that needed it stuck there with a higher premium.
That happened like three times. I went from a $30-a-month premium in the mid-'80s to a $600-a-month premium in the early '90s, which today probably would be more than that, if I was having to do it. But up until that time, I was able to afford that. Then I got a job that actually provided health insurance. So I have been fortunate with that.
I know how lucky I am, because I work with clients all the time that don't have that luxury. And thank God we have the Ryan White program, and the case management programs, and the Ryan White clinics, and the ADAP [AIDS Drug Assistance Program]. But, still, people fall through the cracks.
Backtracking very, very far back: I'm curious about your background. Tell me about the community where you grew up. Was it a small town? Do you have brothers and sisters? I know that you have a well-known name, and a well-known family, as far as sports. But talk a little bit about your youth, your childhood.
I pretty much grew up in Stillwater, Okla. -- which, at the time I was growing up, was a population of about 40,000 people, plus a population of college students that went to Oklahoma State University. I was involved in sports. I wrestled and played football: I played football up until my sophomore year of high school, and I wrestled up through my junior year of high school, which was finally when my father told me I didn't have to anymore. Because I never really wanted to; I did it because I was supposed to.
I was really interested in things like music and theater. Up until I was in junior high, I had been very involved in music -- and then, when I got into high school, there was a conflict in the time and I didn't have the option to do the music.
My senior year, my dad finally realized that I was not happy, and told me that I didn't have to [wrestle] if I didn't want to. So that was actually the best year of my high school, my senior year, because I got to do what I wanted to do. I was in the select choir, I was in the musicals, and did all of that.
When I turned 40, I finally decided to go back to school, and got a master's in human relations. I also got certified as a sexuality educator with the American Association of Sex Educators, Counselors and Therapists. That's the education that I really use in the work I do today.
Which community did you identify with the most? Did you identify with the Native-American culture more, or with African-American culture more? What were the influences on you growing up, and even to this day?
Growing up, I identified as being a Native person. I didn't look that way, but those were the stories I heard from my family growing up. My great-great-aunt: We would sit at her feet and she would tell stories about her great-great-grandparents, and the stories of moving to Oklahoma and what that was like; and living in the Cherokee Nation before statehood. Those were the stories I heard from my family, as a small child growing up. So I knew that as an identity from a very small child, in school.
But I also knew that, unfortunately, there was a lot of discrimination. So I didn't talk about that a lot in my younger years. My relatives -- even my brothers -- we don't all have the same complexion. My middle brother is much darker complected than I am, has very dark brown eyes, dark brown hair. My mom's father has straight black hair, and is dark complected, dark brown eyes. My mother has a complexion more like I do. But she has a sister and brother that are darker complected.
So we have all this kind of mix going on in our family. But we didn't talk about it very much. I mean, if somebody would ask, I'd say, "Yes, I'm Native American." But it wasn't something that we talked about very much. I even had some resistance from one grandmother to not tell people. It was out of concern for prejudice, and so on and so forth. But I didn't really quite understand that.
It wasn't really until after I became infected with HIV that I really started looking into my identity as a person, and reaching back into that. I think it really helped me as an individual, in my self-identity, in dealing with my HIV status and my sexuality, and in embracing that part of who I am.
I know it's been a while now, but how do you feel that having HIV has changed you?
Well, it's hard to know. It's been 26 years. I know I'm a different person than I would have been. There's no way I could not be. I probably appreciate life more than I may have ever done. I appreciate diversity more than I probably would have ever done. I appreciate and understand the struggle and the dedication of the people who have worked to try to put an end to this disease. I feel better about myself than I may have if I hadn't had to deal with the issues that I had to deal with.
God knows, I wish I didn't have HIV. But I think I'm a better person because of it. It's hard to know what path I would have gone on, or where I would be, if this hadn't happened to me.
But it did. And I can't change the past. It has set me on a journey that has been educational, both emotionally and mentally; and I've been able to meet some of the most wonderful people that I would have never probably had the opportunity to know. So I'm very thankful for that.
Do you have any advice for anyone who was recently diagnosed with HIV, or who is just coming to terms with it now?
I work with a lot of individuals from time to time who are newly diagnosed. Some of the things that I hear them say are that they feel tainted, or dirty, that "no one will ever want to be with me," that "I'm going to be alone forever."
What I like to tell them is that you don't know that. You can have a loving relationship. This is one thing that was told to me; because I used to push people away. For many years after I was infected, I wouldn't let people get close to me because of the fear of being hurt. I had a friend tell me, "You don't have the right to tell people whether they can love you or not." And that sunk in, somehow.
So I want people to know that you're valuable. Just because you have HIV doesn't make you a monster. You have something to contribute to this community. You have something to contribute to the world. Maybe you haven't found that yet, but it's there. And this is a wake-up call to find that, and use this as something to change your life in a positive way.
You can let this destroy you, or you can let it lead you down a path and on a journey that will take some struggle; but nothing worthwhile ever happens without struggle. So embrace it. Take the journey. Do what you have to do to live a strong life. And don't let it defeat you.
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.
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